Mechanical Support Measures of Adjustment and QOL

NCT ID: NCT03044535

Last Updated: 2022-02-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

895 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-10-26

Study Completion Date

2020-02-28

Brief Summary

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The purpose of this study is to develop a measurement system to assess adjustment to mechanical circulatory support (MCS) (also referred to as a ventricular assist device \[VAD\]) and health-related quality of life (HRQOL) in patients with advanced heart failure who receive a VAD. This investigators refer to this measurement system as Mechanical Circulatory Support: Adjustment and Quality of Life (MCS A-QOL).

Detailed Description

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It is estimated that 5.1 million U.S. adults have heart failure, with an incidence of 825,000 new cases annually. The prevalence of heart failure is expected to increase by 46% from 2012 to 2030. Mechanical circulatory support (MCS) has been developed as a bridge to heart transplantation and as permanent support (i.e., destination therapy). MCS devices help the heart pump blood to the body. Left ventricular assist devices (LVADs), a type of MCS, support the left heart.

Health-related quality of life (HRQOL) is a very important outcome that advanced heart failure patients care about when making health care decisions, including when considering surgical treatment options, such as heart transplantation and mechanical circulatory support.

Currently available HRQOL questionnaires do not assess the unique burdens of MCS, such as changing power sources and driveline exit site dressings; safety precautions (e.g., no immersion in water, need for an MCS-trained caregiver); troubleshooting VAD alarms; and MCS-specific complications, often associated with frequent hospitalizations. Since these questionnaires do not focus on issues of concern to MCS patients, they lack sensitivity and precision to measure the potentially wide-ranging impact of MCS on HRQOL.

Guided by the investigators empirically supported MCS A-QOL conceptual model, the investigators will use state-of-the-science psychometric measurement methods to create "item banks" (sets of items that comprise carefully calibrated questions which define and quantify a common theme) from the investigators existing MCS A-QOL item pools (library of relevant items). Using calibrated item banks, the investigators will develop computer adaptive tests (CATs) and fixed-length short forms to reduce respondent burden and enhance measurement precision. The investigators will assess reliability, validity, responsiveness to change, and clinically important differences of MCS A-QOL measures.

Conditions

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Quality of Life Heart Failure Cardiovascular Diseases

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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Group 1: Longitudinal assessment

Assessments will be performed pre-MCS, 3 months post-MCS and 6 months post-MCS. Participants in this group must be scheduled for MCS implant.

No interventions assigned to this group

Group 2: Cross-sectional assessment

A one-time assessment will be performed on participants who are post-MCS implant (between 3 months and 10 years post-implant). Participants in this group must already have an MCS device in place.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

1. Advanced heart failure patients accepted for, or scheduled for, primary (first time) implant of a continuous flow MCS device left (L)VAD
2. The continuous flow MCS device implant strategy can be a bridge to transplant, destination therapy, or bridge to recovery
3. Age \>= 19 years and able to speak and understand English
4. Sufficient cognitive ability to provide self-report data on a computer touchscreen/standard computer and/or on paper-based forms with minimal assistance.
5. Willing to participate and able to give written informed consent


1. Patient with a continuous flow MCS device left (L)VAD who is more than 3 months post-implant at the following intervals: 3, 6, 12, 18, 24, 30, 36, 42, 48 months and every 6 months thereafter. Note: patients can have had prior MCS devices.
2. The continuous flow MCS device, implant strategy can be a bridge to transplant, destination therapy, or bridge to recovery
3. Age \>= 19 years and able to speak and understand English
4. Sufficient cognitive ability to provide self-report data on a computer touchscreen/standard computer and/or on paper-based forms with minimal assistance
5. Willing to participate and able to give written informed consent

Exclusion Criteria

1\. Scheduled for implant of a bi-VAD, right (R)VAD, or total artificial heart


1\. Has a bi-VAD, right (R)VAD, or total artificial heart
Minimum Eligible Age

19 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Heart, Lung, and Blood Institute (NHLBI)

NIH

Sponsor Role collaborator

Northwestern University

OTHER

Sponsor Role lead

Responsible Party

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Kathleen Grady

Professor of Surgery and Medicine, Feinberg School of Medicine at Northwestern University

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Kathleen L Grady, RN, PhD

Role: PRINCIPAL_INVESTIGATOR

Northwestern University

Elizabeth A Hahn, MA

Role: PRINCIPAL_INVESTIGATOR

Northwestern University

Locations

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University of California, San Diego

La Jolla, California, United States

Site Status

University of California

San Francisco, California, United States

Site Status

Stanford University Medical Center

Stanford, California, United States

Site Status

University of Colorado

Denver, Colorado, United States

Site Status

Northwestern University

Chicago, Illinois, United States

Site Status

University of Chicago

Chicago, Illinois, United States

Site Status

St. Vincent Hospital

Indianapolis, Indiana, United States

Site Status

Tufts Medical Center

Boston, Massachusetts, United States

Site Status

Integris Health

Oklahoma City, Oklahoma, United States

Site Status

Oregon Health and Science University

Portland, Oregon, United States

Site Status

Vanderbilt University

Nashville, Tennessee, United States

Site Status

University of Utah

Salt Lake City, Utah, United States

Site Status

Countries

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United States

References

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Hahn EA, Allen LA, Cella D, Beiser DG, Denfeld QE, Kirklin J, Lindenfeld J, McIlvennan CK, Ruo B, Teuteberg J, Kiernan M, Klein L, Lee CS, Murks C, Rich J, Stehlik J, Walsh MN, Bedjeti K, Grady KL. Responsiveness validity for measures of adjustment to life with a left ventricular assist device: Findings from the MCS A-QOL study. JHLT Open. 2025 Apr 22;9:100269. doi: 10.1016/j.jhlto.2025.100269. eCollection 2025 Aug.

Reference Type DERIVED
PMID: 40485994 (View on PubMed)

Grady KL, Kallen MA, Beiser DG, Lindenfeld J, Teuteberg J, Allen LA, McIlvennan CK, Rich J, Yancy C, Lee CS, Denfeld QE, Kiernan M, Walsh MN, Adler E, Ruo B, Stehlik J, Kirklin JK, Bedjeti K, Cella D, Hahn EA. Novel measures to assess ventricular assist device patient-reported outcomes: Findings from the MCS A-QOL study. J Heart Lung Transplant. 2024 Jan;43(1):36-50. doi: 10.1016/j.healun.2023.08.007. Epub 2023 Aug 15.

Reference Type DERIVED
PMID: 37591454 (View on PubMed)

Hahn EA, Walsh MN, Allen LA, Lee CS, Denfeld QE, Teuteberg JJ, Beiser DG, McIlvennan CK, Lindenfeld J, Klein L, Adler ED, Stehlik J, Ruo B, Bedjeti K, Cummings PD, Vela AM, Grady KL. Validity of Patient-Reported Outcomes Measurement Information System Physical, Mental, and Social Health Measures After Left Ventricular Assist Device Implantation and Implications for Patient Care. Circ Cardiovasc Qual Outcomes. 2023 Feb;16(2):e008690. doi: 10.1161/CIRCOUTCOMES.121.008690. Epub 2023 Feb 8.

Reference Type DERIVED
PMID: 36752104 (View on PubMed)

Carroll AJ, Hahn EA, Grady KL. Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study. Qual Life Res. 2022 Aug;31(8):2457-2470. doi: 10.1007/s11136-022-03111-4. Epub 2022 Mar 8.

Reference Type DERIVED
PMID: 35258804 (View on PubMed)

Other Identifiers

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1R01HL130502-01

Identifier Type: NIH

Identifier Source: secondary_id

View Link

STU00201984

Identifier Type: -

Identifier Source: org_study_id

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